Living with Ehlers-Danlos Syndrome

The late night breaks are the hardest

One of the frustrating things about living with a lot of chronic health conditions is that you can’t escape watching them progress.

For me, one of the things progression means is more braces. A year ago now, I finally got insurance approval for a $1500 set of braces for my fingers.

I never picked them up.

They’re waiting for me now, in the same office as my physical therapist, who I need to go see in the near future. I desperately do not want them.

I don’t want my hands covered in silver braces that people will stare at and ask about. Bad enough that they feel no shame about asking me why I need a mobility aid – whether it’s my service dog or, in the past, crutches and canes. But to have them querying me about a set of braces that will ruin the slim, clean lines of my hands is particularly hard.

You see, I like my hands. I like them as they are – delicate, petite, long-fingered, slender hands. When I used to work Renaissance Faires, the men would all compliment me on having the hands of a lady.

But no more. My fingers will be bound in rings upon rings of silver. Piles of the damn things. Two to a finger, on bad days. On good days, I could probably get by wearing just 3 or 4 of them instead of all 8.

I’ll admit as braces go, Silver Ring Splints (http://www.silverringsplint.com/) are attractive and inobtrusive. But the fact exists that I will still have a pile of somewhat odd looking silver pieces wrapped around the joints of my fingers, and people will ask. It’s what they do, when it comes to disability – they ask without thought of whether they are prying or asking unwelcome questions. Whether they are prodding sore spots. What they really ask when they say, ‘Why do you have [disability-related aid]?’ what they are really saying is ‘What’s wrong with you?’

A bit rude, really, to pry into someone else’s health records like that. You wouldn’t go around asking random older males if they’re impotent, or asking every woman you passed if they might be pregnant. It’s no more polite to question people about assistive devices, because in all of those situations, you are asking for someone’s medical information, something we’ve deemed important enough to protect that we have laws in place like HIPPA that regulate when other people can talk about your health.

To get back to the topic, out of the blue, at 2 in the morning last night, this hit me. It’s been building for a few weeks, as they’ve tried to remind me to pick up the braces and I’ve selectively forgotten. I know it’s selective forgetting. That doesn’t help me with actually remembering it – I don’t want to.

But at 2:00 this morning, I had just finished my book, and I was far too awake. I turned off the light and tried to make myself start drifting, which will edge towards sleep a good amount of the time, but for some reason the splints rose up in my mind to torment me.

I started sobbing. I am lucky in that my boyfriend’s reaction to being bumped into and squeezed hard by a crying girlfriend some 3 hours after he went to sleep is to comfort, not to get annoyed at being woken. I cried, and I talked to him, and I cried some more. I tried to put into words why I found them so upsetting, and when it comes down to it, it’s a combination of vanity, fear/hatred of my disability advancing, and intense dislike of people staring and prying. There’s also some worry – I know that every new brace means getting your body accustomed to them, which is a very uncomfortable and sometimes painful process. I have a scar on the back of my calf from not being quite careful enough with a new ankle brace. The idea of having my hands be all painful again, when we finally got a combination of meds this time last year that gave me back my fingers, is pretty damn abhorrent.

The idea of people staring at my fingers and adults and children alike deciding to ask about the odd things I am wearing is very upsetting. It’s hard enough that about one in four people I have any contact with feel the need to comment about my service dog – that gets under my skin some days. Or, heaven help me, the sheer number of people who ask if I’m training Hudson, or why I seem to be able to see but have a service dog. On a good day, I can smile at them and explain and give them a card from my service dog organization that explains all the conditions the dogs can help with and includes a sample list of the tasks they do. On a bad day, I give them a much more frozen smile and tell them that I don’t walk well, and turn away so they’ll leave me alone.

I hate being this…visible. I hate the level of focus on my disability and the aids I need because of it. I hate the questions I get from people when they can see my knee or ankle braces. I don’t WANT everyone asking if I’m okay just because they see a new piece of equipment.

I’m sure a great deal of this sounds rather silly. Isn’t it supposed to be nice when people convey that they care about you by worrying about you?

Well, when it’s something that happens to you frequently, it’s not nice. It makes you feel like a freak. Some display of your disability/illness, hung up for the world to see, stared at and wondered over.

The hardest part is that there are few good ways to deflect the questioning. If I tell someone that their questioning is rude, oddly enough I am the one who comes off as being rude. If I’m abrupt in my answer or refuse to answer, much the same. I’ve taken to coming up with relatively short answers that don’t really answer anything. When asked about my knee and ankle braces, I just shrug and say, “It’s just new braces for the same old problems.” That tends to ease people’s worry without spilling my medical information to all and sundry.

But oh, if I could just get them to not stare, to not ask…if I could get them to look at me as no different than anyone else…how very much I would like it.

It would certainly knock out a big part of what keeps me from being happy about new braces that are supposed to improve my quality of life. Maybe then, my knee and ankle braces would come out of the closet and actually be worn.

5 Responses

I hadn’t heard of this kind of splint, so I had to go look.
They are neat-looking! I could see someone asking about them thinking they are a fashion accessory and not noticing that they have a specific function.
They also look like they might be helpful once gotten used to and not so bulky and medical-looking.
I do understand that they have more meaning for you, and they might for me too if I was just getting them. I have a pair of walking sticks that my daughter thinks are cool, but I can hardly stand to use because I know what they are for. Silly, but still. I suppose I look sillier when I struggle without them.
Hugs! Glad your boyfriend knew to comfort when awakened!

I hear you on sticks (for us in the US, those’d be canes, if anyone is curious) – it took me months to get really used to walking with one. When I first started, I bought a collapsible one with a rosewood handle, thinking that I’d just use it when I needed it and fold it up in my bag otherwise. It took me months to admit it, but I discovered that it helped so much that I had to use it full time and hurt my hand, so I eventually gave up and bought one that had a more comfortable handle. I did insist on my first few canes being really pretty to look at. My favorite had compass roses on it.

The lack of bulk is part of why they’ve gotten me these splints. There are 2 kinds of splints that do what I need, one plastic called oval-8 splints and the Silver Ring Splints. I got the fancier, more expensive ones made out of silver because 1) I’m theoretically wearing them for the rest of my life, so they have to be really durable 2) the plastic ones can wear sharp, and my skin gets cut very, very easily which would mean a frequent risk of infections due to little open wounds on my fingers, 3) the plastic ones didn’t come in sizes that fit on my fingers, and 4) the silver ones can theoretically be worn on both the middle and end joints of the finger, whereas the plastic ones you have to pick one or the other.

In reality, we know I’m likely to only wear one at a time, because they get a bit awkward when you wear both, but if I hurt my hand at all, we know that I CAN wear them both, which is important.

The boyfriend really is a wonderful guy, and I feel very lucky to have someone like him. He almost never gets irritated with my needs, physical or emotional. The few times he has, it’s been times when I’m pretty riled up too, because for example we’re going to the ER in the middle of the night yet again… and even then, it’s the situation of going to the hospital at midnight that he’s annoyed with, not the fact that I need to go (if that differentiation makes sense). He’s a good man.

You might want to come up with an answer to prying questions that protects your privacy, educates the asker, and doesn’t sound rude. Something like, “It’s personal.” Full stop. Smile optional, but no details. Repeat as needed.

Definitions and abbreviations

Ehlers Danlos Syndrome: An autosomal dominant connective tissue disorder. As it means the body creates flawed connective tissue, it has the potential to affect every part of the body. In me, it affects my joints, my skin, my ligaments, and my internal organs (particularly the GI and uro-genital systems).

Ableism: discrimination in favor of the able-bodied. This is a deeply ingrained, mostly unconscious preference. It affects our language, building design, social preferences, hiring and promotions, and romantic pursuits, just to name a few things. It is hard to fight because, to borrow a quote, 'no one is against the disabled'.

The fact that in some cases of ableism, people do not consciously choose to discriminate against persons with disabilities does not make it any less discrimination.

In many other cases - including refusal to hire, assault and harassment, ending relationships, etc - the discrimination is very intentional! Some people believe we are less capable and/or less worthy as human beings.